Evie the Extraordinary and Her Mommy: The Journey As We Go

I bet the title got your attention.  When Evie was still in the NICU, we were offered the option of Sildenafil, otherwise known as Viagra, for helping Evie's pulmonary hypertension.  Basically the tiny dose of Sildenafil would help to dilate the vessels to help the oxygen saturation in her blood. (I think.)   Apparently insurance companies get confused when Viagra is prescribed for a baby girl.  The nurse said that sometimes they call and ask if the diagnosis was supposed to be erectile dysfunction.  Yes, ma'am, because a baby girl would have erectile dysfunction.  The other option was oxygen, not because she can't breathe, but because it helps her oxygen saturation levels (i.e. amt of oxygen in her blood) get closer to 100%.  It was tempting to choose Viagra because then we could take pictures without an oxygen cannula in the way.  But Viagra is still a medication, while oxygen is something more benign.  God knows that Evie is already...

This blog isn't all about poop and gas, but I can't resist. Today was our second time at church with Evie.   This time she was awake for most of the service, and sat on Daddy's lap.  As the pastor was preaching, and all was quiet except for his voice, Evie let one rip. TOOOOOT! It was an adult-sized fart that seemed to echo.  People around us giggled.  Erick pointed at Evie. A pastor who shall remain nameless whispered, "Nice job, Erick!" I blame the probiotics. We are trying half a packet of Culturelle for Kids in her nightly g-tube feeding to help her be less gassy. So far she is still gassy--just louder! We'll give the probiotics a little longer to work though. Maybe she's just clearing out her system. Evie's yawn has no bearing on the quality of the sermon. It was a very good sermon! Getting better at taking Ollie the oxygen to church! You wouldn't even know it was there (until you almost trip)!

Dear Evie, Today was Mommy's first foray out into the world for something other than a doctor's appointment, with just you and me.  We woke up early to go to a moms' group at church.  Daddy helped us load into the car. We rolled up into the handicap spot, which was nice, but that's when things got tricky. First, Mommy put your oxygen tank on the side of the car that had oncoming traffic.  So that had to be remedied before getting anything out of the car. Then, once Mommy had slung her purse, your G-tube penguin backpack, the oxygen tank, and the diaper bag over her shoulder, she pulled your carrier out of the car.  The front door was only about 100 yards away, but it seemed like forever.  I got to the top of the stairs to join the other mommies, but I immediately got the oxygen tube caught on the stair rail, and then had trouble lifting you over the rail.  I was terrified I would drop you down the stairs.  Thankfully, some other mommies ran to my re...

My husband and I had a discussion about why Sophie the Giraffe is so beloved and effective, yet so simple.  This rubber giraffe is $18-25, and Erick was just astounded that it is so expensive.  I told him that EVERYONE has this giraffe, and he asked why it was so special.  This post is dedicated to my dear husband. A rare photo without her oxygen cannula Evie LOVES Sophie.  So the question is why? 1. Who wouldn't love a toy with its own Wikipedia entry and Facebook page?  I knew Sophie was French, but had no idea she was so old.   2.  Why not a penguin, a duck, or an elephant?  It's the neck.  A giraffe has the perfectly sized neck for an infant to grab and practice motor skills.  Then why not an ostrich?  The neck is too skinny, and no ears for baby to suck on! (You can tell I am sleep deprived, because I am thinking of the ideal animal for a rubber toy.) 3. No batteries required.  Since Evie was born, our batt...

Thanks so much, everyone, for your comments and the encouragement for writing this blog.  Each "Like" and comment means so much to me.  I am inspired to keep writing about my extraordinary girl and our journey.  Hopefully Evie will take a few good naps each day so I can keep this up!

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st?  Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids.  I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here .   Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before.  Still overwhelming sometimes , but I wouldn'...

My mother-in-law leaves today!  She's been here for 6 weeks, and before that my mom was here for 3 weeks.  I haven't had to think about what to eat for lunch or dinner, and I've been able to get my errands done efficiently, because Grandma knows how to clamp and disconnect a G-tube bag.  Yay for grandmas. And now, Evie and I will drive Grandma to the airport, and now there will be no one in the backseat to shush her when she's crying, and no one to hand me the oxygen tank when I pull out her carrier.  But I think I'm getting it down. I just need to build in more time to maneuver everything.  Behold, my new "do you have everything" list: Not your average list, but it gets the job done!